Diminishing Expectations

More and more, when I arrive to see my mom in the Courtyard at NHC Place, she's sitting at her normal table, head nodded forward, asleep.  On weekend mornings, when I'm always there, it's quiet with no activities ongoing.  Sometimes, the television will be on, playing a box set of I Love Lucy, the Munsters or Andy Griffith.  But, from a staffing standpoint, it appears there is no activities person there on weekends.

In the beginning at Maristone and even when we moved my mom into Aspen Arbor at NHC Place, I would have been mortified to see my mom sitting in the common area, slumped over, asleep, nothing within reach to occupy her time.  In fact, I complained to the administration at NHC Place in her early days at Aspen Arbor about the inactivity on weekends.  For a while, one or two of the CNA's played dominos, cards or worked puzzles with the residents who were interested on Saturday and Sunday mornings.

In fact, I often thought to myself how sad it was when I arrived at Maristone or Aspen Arbor and saw a few of the residents slumped over, almost like they were very literally bored to death or had simply given up on life.  Or, maybe, that life had given up on them.

And, now, that's where I find my mom.  Slowly but inevitably, she has become one of those people who is bored to death, or closer to death, maybe, or has simply given up on life.  Or, maybe, life has given up on her.

The question that nags at me, that I can't stop considering is this - Have I given up on my mom?  Have we - Tracy, Alice and I - given up on my mom?

By not complaining to the administration at NHC and raising hell about the lack of planned activities on weekends, am I showing my mom I've given up on her?  Sometimes it feels that way.

Alzheimer's disease and the journey on which it has taken me, with my mom and my family, is strange.  And fascinating, in a way.  One thing I've discovered is that what I expect in terms of what my mom is doing on a daily basis - well, it diminishes over time.

She used to color in coloring books constantly when she first arrived at Maristone, for God's sake.  Not anymore.  She used to wheel herself all around Aspen Arbor and interact with the nurses and other residents.  Not anymore.

And, what I'm willing to accept in terms of how she is doing - it diminished over time, too.

I call it the law of diminishing expectations.  

It's sad and it breaks my fucking heart.

I wonder, sometimes, should I be there every day reading to my mom, insisting that she try to play games with me?  Should I be there every day taking her for walks all over the facility?  Should I be standing on a table in the Courtyard, jumping up and down, demanding more activities for the residents?  Should I be banging on the director's door and complaining about the lack of activities on weekends?

I don't how I can live my life, though, and be the attorney I need to be for my clients at work; and be the father I need to be and the husband I need to be; and be the coach of two baseball games I need to be; and be the friend I need to be; and be the runner I need and want to be; and find a new truck to buy now that mine, after 12 years and 214,000 miles is finally at the end of the road - how can I be and do all of those things and be at the Courtyard visiting my mom every day?

I think my mom would and did figure out how to do all of those things when she was caring for my grandmother and my Aunt Sara.  It sure seems that way, now, looking back.

I wish I would have asked her how she did.  I wish I would have asked her how she maintained some semblance of balance in her life.  I wish I would have asked her how she answered the nagging little voice in her mind that was telling her she wasn't doing enough.

But, I didn't ask her then.  And, now . . . well, now, she can't answer me if I do ask her.